Parents of premature babies should seek support

When Oran was born at 25 weeks, his mum received invaluable help from a charity which supports families of premature babies, says Ailin Quinlan 

Parents of premature babies should seek support

ORAN FOY has encountered more challenges in his first six months than most of us would face in a lifetime.

At nearly seven months old, the Edenderry, Co Offaly boy has been on a life support machine, undergone numerous blood transfusions, has a heart monitor, an oxygen generator to help him breathe, and a sleep apnoea monitor.

The reason? Oran was born prematurely on April 20, 2014 at 25 weeks weighing just 550gms.

He was on a life support machine for the first 21 days of his life in the National Maternity Hospital in Dublin’s Holles Street, where he spent a total of 13 weeks before transferring to Mullingar Regional Hospital for a month before finally coming home on August 21.

“He has had numerous blood transfusions to keep his platelet levels stable,” explains his 37-year-old mother Irene, who also has a 12-year-old son Dylan.

“He now has an oxygen generator to assist with his breathing 24/7 due to chronic lung disease and being born extremely premature, as well as a heart monitor.

“He also has a sleep apnoea monitor because premature babies are at huge risk of not breathing while sleeping — they literally go into a deep sleep and forget to breathe.

However, says Irene, she’s pleased with his progress — Oran is getting big, she says, and, developmental wise, has come on in leaps and bounds

“At six and a half months old he weighed nearly 12lbs, which is still small but a good sign. He has just started smiling which would normally happen at six to eight weeks in a full-term baby, but really Oran would only be three and a half months old because he wasn’t due to be born ’til August 7.”

It’s been a lonely six months, because visitors are essentially banned.

“You’re effectively in lockdown because Oran needs 24-hour care, and you can’t have visitors in case anyone would bring an illness with them— the biggest threat in the first winter is the respiratory system virus which could, worst case scenario, see him back on a life support machine,” says Irene.

Throughout the process she was supported by Irish Premature Babies, Ireland’s only registered charity established to support families with a premature baby. Around 4,500 babies are born prematurely in this country every year.

The charity supplied her with a breast pump, clothes, and essential items for Oran and helped with the cost of her commute each day to Dublin.

To date the organisation has donated €200,000 to the neonatal intensive care units throughout the country.

The charity comprises volunteers who provide a wide range of services for families and particularly for those struggling financially, as well as home support grants for families who have preterm quads; bereavement counselling; emergency assistance with accommodation travel, and care packages for families while their babies are in the neonatal intensive care units.

The group also runs workshops on first aid, breastfeeding and expressing milk, art therapy and sensory issues.

Parents of premature babies — born under 36 weeks — need a lot of support. According to Eleanor Molloy, consultant neonatologist in the Coombe Women’s and Infants Hospital, such babies can often face significant challenges in the weeks and months after birth.

However, she emphasises, outcomes are constantly improving as medical care becomes increasingly effective:

“We have found that giving steroids to mums who are due to give birth to a premature baby in the last stages of pregnancy really improves outcomes in every aspect of the baby’s health.”

There are several stages of prematurity, she explains. Late premature babies — born between 32-36 weeks, may experience subtle development problems but their overall health is generally very good, although they can have a higher risk than a full-term baby of having complications.

Babies born between 28 and 32 weeks, usually referred to as very low birth weight babies, would be routinely admitted to the intensive care unit .

They may have brain haemorrhage or brain injury, complications such as breathing problems and or subtle to severe development problems such as cerebral palsy.

Babies born under 28 weeks and under one kilo in weight are extremely low birth weight babies, and can experience more complications such as brain bleeds and haemorrhages.

They can also be at a higher risk of conditions such as cerebral palsy and intellectual disability.

“There is a huge spectrum of outcomes but many babies born early are perfect. Outcomes are much better now and we are more positive than ever before about this because outcomes have really improved in the last five to 10 years.But we have to warn parents of the existence of possible development problems such as poor concentration, cerebral palsy, hearing loss, visual or breathing problems,” she says, adding that all premature babies can experience feeding problems.

“Parents are amazing . It is a very challenging situation and we try to give them a good comprehensive overview of what they may face”.

HOW TO SEEK HELP 

Families need strong support following the birth of a premature baby — in a recent study, 70% of parents of premature babies said they wanted more psychological and emotional support.

The research, conducted over August and September on behalf of the Irish Neonatal Health Alliance and the biopharmaceutical company AbbVie, found that when speaking about their children, parents of premature babies used words like ‘anxiety’ (57%), ‘stress’ (55%), ‘fear’ (50%) and ‘isolation’ (38%), while parents of full-term babies used phrases like ‘joy’ or ‘happiness’.

One third of parents of premature babies said having a pre-term infant made them less likely to have more children, although 50% said it had not changed their view on having more babies.

Three in 10 were worried about the long-term health implications for children born prematurely, while just over 25% worried that their child’s intellectual development could be affected.

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